Tomorrow (Thursday) is Julia's next set of 3 month scans and oncology check up. As hard as it is and as anxious as it can make you feel, a part of me has always been reassured knowing we are checking up on her status and hopefully getting an all clear. Right now I just want to run the other way. I think we have just had so much medical stuff around here lately I just want to run.
Julia is still healing well. Her flushes have been somewhat of a challenge the past few days. My only guess is that the medication we're adding is causing some sort of cramping that she didn't have with the other from of it. The protesting has increased again and it makes her very angry. She cries and yells for the full hour while we wait for the drug to have its effect. She takes most of the anger out on me- hitting, scratching, wailing. I usually try to just stay in a neutral place and calmly give her her choices over and over again while going through the motions. I just wish it could be different.
We are trying to get her back into as much of her previous activities and life as we can. This week we tried to go back to dance. No such luck. There was lots of crying, lots of screaming, and in the end she completely refused to join her dearest friends in something she loves. She announced emphatically she is never dancing again. I know this must be hard for her and I pray we can find a way to help her feel comfortable again. It's just so frustrating. Parenting is hard enough. Parenting kids under extreme health conditions and stress is insane. Lately both the kids are into the "it's not fair!" stage. It's not fair Carter gets more playdates. It's not fair Julia gets to stay up later when she has to do her flushes. It's not fair Julia gets special attention from others. It's not fair... I am so over it. None of this is fair to anyone in this house, but life is not fair and everyone needs to accept that as soon as they can. I cannot make any of this seem more fair and I am not about to try. It all just adds to the tension.
The kids are still going to counseling at KidsPath and look forward to their weekly visits. I have seen progress with Julia already in being able to name her feelings about different situations. She has so much going on inside and seeing her able to talk about even a small part of it is huge. It is like a ray of sunshine every time it happens. I am so thankful for their role in our life. It has been such a divine blessing.
It has been another crazy day. We have so many appointments this month it makes everything feel more hectic. We started the week with Monday's middle of the night storms- power outages, 60mph winds, trees down, and hail. We were thankful for a good night's sleep last night after a rough night with Julia's flushing. This morning both the kids had counseling and I had a conference call for our October 1st CureSearch Walk. Unfortunately, the times overlapped. Welcome to my office...
I am happy to say it worked. By having both the kids watch a movie with headphones, packing their lunches, and setting up camp in the back of the car- I was able to get in the needed two hours of phone calls. Mom's can be so creative at times :) Sadly, at some point in the process I leaned against my car keys with my cell phone in my pocket and it shattered the screen. Cell phones aren't very useful without a screen. So we spent the next hour at the AT&T store replacing my phone. Got everything transferred and where on our way, but less than four hours later the screen went out on the new phone for no reason. I guess I won't be talking to anyone anytime soon. Ugh. Guess we're going back to the phone store.
And today is our wedding anniversary- nine years! So hard to believe. It has been quite a roller coaster, but we are happy to say we have made it through. That is no small achievement under these pressures. The statistics for families in these situations are grave and every day we make even the tiniest step in a positive direction it is an accomplishment. I am so thankful to have a husband who has stood by me through some dark days. Someone who picks up the slack year after year with my own health challenges. Someone who can always find a way to make everyone in the house laugh. Someone who gives his kids 110% every evening when he walks through door. Someone who can step in at any moment and take care of everything without missing a beat. I love you honey! Happy Anniversary!!
Tomorrow we will be at the hospital at 9:30am. We will start in the clinic with labs. Julia's scans are scheduled for 10:45. They have been jostled a few times so I am cautiously optimistic they are going to happen in a timely fashion. We have had to sit before and wait until they agreed to fit us in, so it may happen again. We should have the results before we leave. Then next week she will have her renal studies done. The following week is urology and genetics. One step at a time.
Julia is still healing well. Her flushes have been somewhat of a challenge the past few days. My only guess is that the medication we're adding is causing some sort of cramping that she didn't have with the other from of it. The protesting has increased again and it makes her very angry. She cries and yells for the full hour while we wait for the drug to have its effect. She takes most of the anger out on me- hitting, scratching, wailing. I usually try to just stay in a neutral place and calmly give her her choices over and over again while going through the motions. I just wish it could be different.
We are trying to get her back into as much of her previous activities and life as we can. This week we tried to go back to dance. No such luck. There was lots of crying, lots of screaming, and in the end she completely refused to join her dearest friends in something she loves. She announced emphatically she is never dancing again. I know this must be hard for her and I pray we can find a way to help her feel comfortable again. It's just so frustrating. Parenting is hard enough. Parenting kids under extreme health conditions and stress is insane. Lately both the kids are into the "it's not fair!" stage. It's not fair Carter gets more playdates. It's not fair Julia gets to stay up later when she has to do her flushes. It's not fair Julia gets special attention from others. It's not fair... I am so over it. None of this is fair to anyone in this house, but life is not fair and everyone needs to accept that as soon as they can. I cannot make any of this seem more fair and I am not about to try. It all just adds to the tension.
The kids are still going to counseling at KidsPath and look forward to their weekly visits. I have seen progress with Julia already in being able to name her feelings about different situations. She has so much going on inside and seeing her able to talk about even a small part of it is huge. It is like a ray of sunshine every time it happens. I am so thankful for their role in our life. It has been such a divine blessing.
It has been another crazy day. We have so many appointments this month it makes everything feel more hectic. We started the week with Monday's middle of the night storms- power outages, 60mph winds, trees down, and hail. We were thankful for a good night's sleep last night after a rough night with Julia's flushing. This morning both the kids had counseling and I had a conference call for our October 1st CureSearch Walk. Unfortunately, the times overlapped. Welcome to my office...
And today is our wedding anniversary- nine years! So hard to believe. It has been quite a roller coaster, but we are happy to say we have made it through. That is no small achievement under these pressures. The statistics for families in these situations are grave and every day we make even the tiniest step in a positive direction it is an accomplishment. I am so thankful to have a husband who has stood by me through some dark days. Someone who picks up the slack year after year with my own health challenges. Someone who can always find a way to make everyone in the house laugh. Someone who gives his kids 110% every evening when he walks through door. Someone who can step in at any moment and take care of everything without missing a beat. I love you honey! Happy Anniversary!!
Tomorrow we will be at the hospital at 9:30am. We will start in the clinic with labs. Julia's scans are scheduled for 10:45. They have been jostled a few times so I am cautiously optimistic they are going to happen in a timely fashion. We have had to sit before and wait until they agreed to fit us in, so it may happen again. We should have the results before we leave. Then next week she will have her renal studies done. The following week is urology and genetics. One step at a time.
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